Is anyone diagnosed at stage 4, with swollen lymph nodes all over, with it in the bone marrow, and so-on still on watch and wait?

[RemingtonSteele]

[AussieNeil Partner Administrator]

May I ask what is the purpose of your question? Finding like company doesn't mean that being in this situation is necessarily right for you. I've met your criteria for 4 and a half years, but see a haematologist every 3 - 4 months and while I can see the time for treatment is approaching, it hasn't yet arrived. It is the specifics of your case and the experience of your specialist that determine whether treatment is appropriate if that's what you are wondering?

Neil

[RemingtonSteele]

Sure you may ask. However, I wasn't looking for like company or validity. I had never met anyone who was on this stage who wasn't so I was curious to see how common it is. Four and a half years is reassuring.

Remington

[MsLockYourPosts Passed Volunteer]

I went crazy when I was first diagnosed trying to figure out my stage - googled both Rai and Binet Staging systems. I didn't fit either one exactly. I didn't have symptoms for lower stages but had some of the symptoms of higher stages. None of my doctors ever staged me. I think it's more important to have a doctor who looks at you as a person, not as a stage on a chart. There are other issues besides staging that would indicate a need for treatment. You don't say where you are from or whether your doctor is a CLL specialist. If not you might want to consider at least a consult with a specialist for your own peace of mind. Many people see a specialist occasionally and that specialist works with their local doctor.

[Cllcanada Top Poster CURE Hero]

CLL or SLL? SLL patients are staged differently...they use Ann Arbor...

surgpathcriteria.stanford.e...

[jangreen]

Hi my specialist consultant told me that starting treatment is an art form not a science. Best wishes

[AussieNeil Partner Administrator]

Check out our previous polls:

How-long-after-diagnosis-did-you-first-receive-treatment-or-are-you-on-watch-and-wait?

healthunlocked.com/cllsuppo...

How-many-years-is-it-since-your-diagnosis-with-cll-sll?

healthunlocked.com/cllsuppo...

Neil

Dx SLL/CLL Stage IV. At diagnosis, my ALC was under the CLL level (5), but flow cytometry was able to confirm CLL from a peripheral blood sample. I wasn't told whether my diagnosis was done via Rai or Ann Arbor staging, but on self assessment, I'd be stage IV on either and life expecancy also works out about the same.

[UKwoman]

Yes I have been at this level for nearly 7 years - ever since diagnosis when a swollen lymph gland was removed from my neck. I only see a specialist once a year and am on the w & w as otherwise in good health.